Use of a generic Paediatric Patient Reported Outcome Measure (P-PROM) in Routine hospital Outpatient Care for Kids (ROCK): A qualitative exploration of adolescent, caregiver and service provider perspectives (P-PROM ROCK Phase 1).

Abstract

Purpose: To explore patient, caregiver, and service provider perspectives on the implementation of a generic Paediatric Patient Reported Outcome Measure (P-PROM), their perspectives on the EQ-5D-Y-5L, and to consider how these insights can be used to co-design routine use of EQ-5D-Y-5L in paediatric outpatient care.

Methods: Individual semi-structured interviews were conducted with adolescent patients, caregivers, and providers (allied health, nurses, doctors) who had provided or received outpatient care at The Royal Children's Hospital, Australia. Interview transcripts were analysed using framework analysis and subsequent themes were mapped to an acceptability framework.

Results: Interviews were conducted in June and July 2023 with six service providers, five caregivers and three adolescent patients. Despite service provider concerns that generic P-PROMs may be too broad; all were open to their use. Participants did not see value in patients simply completing a generic P-PROM; it was emphasised that such information needed to be used and responded to. Participants were largely supportive of using the EQ-5D-Y-5L in clinical care, although some were concerned about the short recall period and negative framing. Displaying EQ-5D-Y-5L responses by item was preferred by participants. These different perspectives were summarised into enablers and barriers of acceptability.

Conclusions: Perspectives gathered from this study highlight that generic P-PROMs, such as EQ-5D-Y-5L, may have potential for use in paediatric outpatient care. However, to have a meaningful impact, careful consideration is needed regarding implementation. Results have informed co-design of the P-PROM ROCK Program.